Thursday, May 28, 2009

Quick update

Ayva is finally home. She's ok, but will need follow ups. Update more later.

Monday, May 25, 2009


We are pretty much in a state of limbo at the hospital. Yes, you read that right. Ayva is STILL in the hospital. This Wednesday will make it three weeks. :( They still have no idea what caused all of these things to happen, but will be followin up with her **when** she goes home. Her blood levels are remaining stable, but on the low side. Her potassium is still low, but is on it's way up and is pretty close to normal. Her sodium came down and is still high, but is also close to normal. Her BP's have been excellent (thanks to 2 BP meds!). SOOO as soon as she can stabilize her electrolyte levels (her potassium and sodium in particular) by herself, she can go home!!!! I am thinking it will be Wednesday or Thursday, but who knows! Ayva's last ACTH shot will be Tuesday~~ thank God! Even though it made her seizures go away, I will always call it the shot from HELL!! Other than that, our lives have pretty much been on a hiatus. Justin has been staying home with the Anna and Justin and you can tell they miss their mommy and sissy. They just aren't acting their usual happy selves.

Anyway, I just want to thank everyone who has been supporting us and helping us out during all of this...Mom, DeeDee, Grandma Dean, Julie, Debbie, etc. We really appreciate everyone who has prayed for Ayva and can't thank you enough. I will update again if I get anymore news and hopefully it will be from home, with our little fighter, Ayva.

Friday, May 15, 2009

The worst...

Well...we are still in the hospital with Ayva. They know nothing more than they did on the 6th. Her platlet and red blood cell count keep dropping for an unknown reason. She had to have a second blood transfusion last night and as of this morning her RBC was 13 (up from 6.2 when they transfused and 12 right after the transfusion). Her platlet count dropped from 72 to 47 in a matter of 12 hours. They don't know why. She cannot go home until we figure out why, or until they are confident that her levels won't drop anymore. If her platlets drop into the teens, she will need a platlet transfusion. I just can't believe this is happening. They no longer think it has to do with her kidneys (since her kidney function has been good this whole time), so the one thing they thought it was, it isn't. I was so nieve. I thought that the doctors would be able to know what was wrong and fix it, but here we are, 10 days later, and they still don't know anything more than the day we came into the ER. NOT TO MENTION that along with her blood issues, she has high blood pressure which caused the left ventricle in her heart to thicken and is resulting in her heart rate to be very fast. She has 2 infections (c diff. and campylobacter), we found out that her sats drop to 88 everytime she sleeps (should be in the 90's) and she tested positive for influenza B! The poor girl just can't catch a break. So we will definatly be in the hospital through the weekend, and hopefully by monday they can find out how to keep the counts from dropping or what the acutal problem is.

Thanks to everyone who is helping us out. Please keep praying.

Friday, May 8, 2009

You've got to be kidding me...

Ayva is in the hospital. She's either caught something from her lowered immuinity from being on ACTH, or ACTH has made her body do mean things to her blood. I'm asking everyone to keep her in you're prayers. She could possibly have kidney damage (although as of now she is showing no signs of that). We could be there for a while yet... It's very hard to be away from Ayva while she's sick, but it's also hard to be away from the other two... Please pray....

I will update everyone as soon as something is known...

Wednesday, May 6, 2009

Way Back When-sday

For more Way Back When-days go check out Cheryl's blog at Twinfatuation!
May 2008


Justin, Anna and Ayva
Ayva, Justin and Anna

Our very first walk

Tuesday, May 5, 2009

Tuesday Blog Party

This fantastic fundraiser/give-away is being held in honor of Tuesday Fiona Whitt, my dear friend, Jess' twin daughter who bravely fought and sadly lost her 8 month battle with neuroblastoma in January 2009.


Monday, May 4, 2009

Just a glimpse into my life...

So I am sitting here, trying desperately to get Ayva to sleep, I thought I would just give you all a rundown of my day today. Just any other day in a house with a husband and triplets- one of which is on a VERY high dose of ACTH.

3 am: Ayva wakes me up screaming. She wakes Anna up also. I try to calm her down.

330 am: After several attempts to calm her down and keep her in her bed (all the while I try to lay down myself with no luck), I give in and take her in the living room.

4am: Still fussing off and on. It's like her poor little body can get calm, and then be shook up again. I'm not sure if she's in pain or she's just agitated.

445am: Try to move her onto the boppy. She lays there for a little while, calmer, but not asleep.

5 am: I can give her her pain medicine now. I do. I try to lay on the couch with her until it kicks in. She wants me to be constantly rocking her. When I doze off, she cries.

550 am: Put Ayva down to make her a bottle. She screams. I try to hurry. She gulps it. Is still agitated and fussy. I rock her until I hear Anna talking from her room.

610 am: Anna is awake. I put Ayva down and go get her. Make 2 sippies of milk, and then go to fetch Justin. He's still asleep, but I wake him up anyways.

7 am: Draw up 6 syringes of medicine and give 4 to Ayva and 1 to Anna. Leaving the shot for last. Justin (hubby) wakes up. My mom shows up (it's her day off).

745 am: Make oatmeal and a breakfast taquito. Nobody wants to eat. All three munchkins have runny noses.

8 am: Time to give Ayva her shot. It's a terrible feeling. Hoping it's worth it. She cries. Grandma holds her.

830 am: All are dressed now. Time to play. Grandma holds Ayva.

9 am: Time for Justin and Anna to take their morning nap. Nighty-night. Ayva stays up and waits for time to leave for her peditrician appointment.

930 am: Ayva and mommy leave for the peditrician. Ayva is always happier outside. Crying stops for the car ride until I have to take her out of her car seat.

950 am: Check in at pedi. Sit on "Well" side. Other parents stare at very chubby, agitated, and generally not feeling well Ayva.

1010 am: Finally get called back. I undress her- she cries. Weight check- 20 lbs. Temp: 100.1 BP:98/65.

1015: Dr. J comes in. Listens to Ayva's heart/lungs. Asks how things are going- I tell her. She looks at her throat- says it's all red. Has nurse take an influenza swab just to be safe. She tells me to call about it tomorrow. We leave.

11 am: Drive thru Taco Bell. Ayva is calm b/c we are outside.

1120 am: Arrive home. Eat tacos. Ayva swings in her swing and takes a mini nap.

1130 am: I decide that while my mom is here, I should take hubby and my clothes to laundry mat to catch up.

12 pm: Leave kids w/ grandma and head out to laundry mat. Read US weekly magazine while I wait.

2 pm: Get all clothes and head home. Fold/hang up/put away all the clothes. My mom leaves.

3 pm: Hold Ayva while Justin and Anna play around me.

345 pm: Put Ayva down while I make them dinner. She cries. Justin doesn't want to eat- only cry. No one is hungry. They each eat a little, and are done. Justin is still crying. Get everyone pj's and go back into playroom. Change everyone and try to settle Ayva.

5 pm: Feed Ayva a bottle while Anna and Justin hold their own sippies of milk.

545 pm: Try to lay Ayva down in her bed. She is calm and falls asleep.

625 pm: Justin and Anna are tired. Put them to bed. All is quiet.

630 pm: Go outside and feed the dog. Brush her winter coat out. Play fetch for a minute.

645 pm: Justin starts crying. Go in his room and give him Rupert (his monkey).

7 pm: Eat dinner as fast as I can, so I can finish before being interrupted.

730 pm: Ayva wakes up screaming. I go and get her and sit on the couch with her. She calms down. I hold her for a while until she gets fussy again.

815 pm: Feed her another bottle and she is calm again. I try to lay her in her bed. She can't get calm. I try to hold her. I try to put her in her swing. I try to lay her in her boppy. I try to hold her....etc. etc.

1048 pm: I put her in her swing. She is calm for the moment. I will try to go and lay down, but it seems like everytime I walk towards my bedroom door, she cries. She's not asleep. I'm hoping she will be soon.....because I know sometimes it goes on all night like this....

Sunday, May 3, 2009

March of Dimes Walk

Today was a beautiful day. We all had a great time at the March of Dimes Walk.
Here are the pictures I took today!!

L-R: Dee Dee, Justin, Janis, Sarah, Ashtin, Julie and Amy
strollers: Ayva, Justin, Anna, and Makenna

The kiddos with KC Wolf

Ayva is sleeping, and Justin and Anna are enjoying some cheetos!
Justin and Makenna holding hands :)

Thanks to all my peeps who came with us today. I think we did a good thing, and had a lot of fun, and hope everyone wants to do it again next year!

Saturday, May 2, 2009

Day 76 of ACTH

Ayva has been on ACTH for 76 days now. That's a little longer than we expected, but it's working. Dr. A had originally planned for her to be on it for 8 weeks, we are just now pushing 10. I haven't seen any seizures for about a week now, and I'm praying that when May 12th rolls around, and we start weaning off ACTH, that it will stay like that.

Here is a pic of Anna and Ayva laying next to each other. You can see how much bigger Ayva (on the right) looks than Anna. Her face is fuller and her belly is bigger.
**please ignore the food stained diaper on Anna. She is the messiest baby when she eats, so she's ALWAYS messy**

And here are just a few pics of Anna and Justin testing out the new triple stroller in our living room. They seemed to like it, and sort of fussed when it was time to get out!

Tomorrow is the big March for Babies walk!! We are super excited and hoping it doesn't rain. Keep your fingers crossed!! I will post pics when we get back!